I have been successfully tapering my Prednisolone dose by 1mg a month since October last year. My CRP scores have not got beyond 2 for the past 8 months and I have no symptoms of GCA. Hurrah. But in the last 3-4 weeks I have suffered aches in both legs, front and back, day and night, and I get very tired at periods during the day, and am worn out by 9pm. I sleep well for 7-8 hours.
I asked my rheumatologist if I needed to see her, or my GP about this, and she said it was probably related to reducing my steroids, and to take paracetamol, which eases if for a while but it always comes back.
Has anyone else experienced this? Or does anyone know what causes it, if not tapering?
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Handloomweaver
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I don’t have PMR, it’s GCA only. I’m on 4mg of Pred a day at the moment. I also take Methotrexate to assist in reducing Pred. My progress is being monitored monthly by my rheumatologist.
I agree that the tiredness could be my adrenals stuttering. Not sure that’s the cause of the aching legs though. Thanks for responding.
Sometimes adrenal insufficiency can cause muscular pains - and as you have GCA some do report issues with calves when walking -is it that -or all the time?
I have been diagnosed with this recently it's truly miserable.So I can now add this to my fractured spine, my need for my other hip to be replaced plus my PMR ! Happy days 😊
It doesn't really attack the eyes very often although it can. It is arteries that supply the optic nerve that are more likely to be affected so it is unable to transmit signals from the eyes to the optic centre deep in the brain.
PAD isn't only due to GCA but it is thought that there is an increased risk of atherosclerosis in the arteries because of the scarring caused by inflammation due to GCA - that is the buildup of fats, cholesterol and other substances in and on the artery walls called plaque.
No..cranial GCA can be all arteries in head, extra cranial GCA aka LVV - major arteries _ which then can affect arms/legs ..So not as clear cut as some think.. so always worth checking to make sure
That's useful, thanks. It's interesting that when I first started to have symptoms, before I got temporal pain and claudication, I had pain on both sides of the back of my head, where the diagram shows the artery position. I had that pain for about 4 days before it moved to the sides of my head above my ears and then into my temples. That's when I went to my GP!
The reason the TA gets mentioned so much is because it is the only one they can see and get at to biopsy - NOT because it is the one most affected. But too many doctors don't realise that ...
Mine is my arms and legs, I have had my BP medication altered its been upped and I can manage better now, but pad is an awful thing.Just think when we were young we took our health for granted.!
I’ve had aching/weaker quads since Feb, a few weeks after dropping from 6 to 5.5mg of pred. Now down to 5mg and still have this symptom, albeit some days are worse than others. At my yearly face-to-face appt with my rheumy she mentioned steroid induced myopathy (I’ve been on pred 6+ years now for PMR). I don’t have the dull ache in any other muscles.
I’ve been trying to slowly strengthen my legs muscles in particular engaging in some form of exercise every second day (deep water exercises in the pool, walking, pickleball, golf). I take the occasional Tylenol which helps a bit.
Hi Handloomweaver, Yes, I also have been suffering painful, achy legs during the day and during the night. I am currently at 2 1/2mg prednisolone, I have been at this dosage for 4 weeks. I do not believe the pain is caused by a flare. I don't have fatigue, I generally sleep well. However after interrupted sleep or a busy day I can sleep 11 hours.
I have had PMR for 3 1/2 years and taken prednisolone since being diagnosed starting at 20mg and reducing ever since with several flares along the way. I have used different methods for reducing and recently have been reducing by 1/2 mg around 5 weeks or so depending on how I feel and what upcoming stresses are ahead.
I did do some gardening last Saturday and after that felt tired then came the onset of painful, achy legs. I put the aches and pains down to gardening and figured it was DOMS.
I also started a Pilates class on Wednesday, starting very slowly. With one of the Pilates exercises I experienced extreme pain in my thighs so I stopped immediately doing that exercise.
I have taken Paracetamol and it has helped, also I have been bearing the pain without taking Paracetamol.
I am sure that gardening and Pilates have contributed but I wondered if the aches and pain could be attributed to withdrawl symptoms from Prednisolone.
You stated in your post that your GP seems to feel that the aches and pains may be related to reducing the steriods. This for me so far, fingers crossed, confirms my surmising.
I hope that my post is of help to you, and I thank you for your post, it good to have support from fellow suffers.
Interested to hear about orangecakes gardening and pilates experiences. I'm doing a bit of gardening in short bursts (just got down to 3mg Pred) but have started back at pilates, quite gentle with a well informed instructor.Feel great afterwards, but next day hip and thigh pain and struggle with my 1 mile morning walk. So am treating it as a flare and upping the pred by 5mg. Still on day 3 of this so hoping. Suppose I'll have to stop pilates which will be disappointing.
As you’ve only just gone back to Pilates, I think most people would ache a bit the following next day…but that’s more likely to be DOMS rather than your PMR complaining.
So stick with the Pilates, over time the DOMS should become less of an issue as your body gets more accustomed to the new exercise regime. Plus until that occurs maybe forgo the 1 mile the following day or at least moderate it.
At such low levels, not every ache or pain is a flare of illness. 😊
You do have to start as if you are an absolute beginner so don't give upi just yet, Just dial your expectations right back and pretend you have never done it before. And have a day of rest before the full walk.
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